The regulation of egg and sperm donation for reproductive purposes in the UK is covered by the Human Fertilisation and Embryology Act 1990 and subsequent amendments. It has long been regarded as a model of thoughtful, ethically grounded regulation. However, the landscape in which gamete donation operates is changing rapidly. New technologies, shifting social norms and the experiences of those directly involved in donation all point to a need for changes in current policy. Consecutive UK governments now recognise the need for law reform, as have other international regulators, such as those in Belgium, Denmark and Japan. Here, Professor Lucy Frith and Professor Petra Nordqvist draw on their research to highlight areas where the current system falls short and make recommendations for change.

• Research findings suggest that direct-to-consumer genetic (DNA) testing fundamentally alters the landscape of donor conception.
• Regulation should consider greater flexibility in donor conception arrangements and the importance of wider donor kinship networks.
• There is a shortfall in counselling provision for those involved in donor conception and legislation and policy in the UK should be updated to strengthen support structures.

Direct-to-Consumer genetic testing has changed the landscape fundamentally

Perhaps the most urgent issue is one that the original legislative framework could not have anticipated: the rise of direct-to-consumer genetic testing (DTCGT). Services such as 23andMe have made it possible for anyone (donor-conceived people, donors, and wider relatives) to discover genetic connections outside of the official register run by the Human Fertilisation and Embryology Authority (HFEA).

The ConnecteDNA project, drawing on interviews with 101 donors, donor-conceived people and recipient parents, has documented the profound implications of this shift.

Donor-conceived people are discovering their ‘donor’ connections earlier than the law intended. The law that states that donor-conceived people can only access identifying information about their donor at age eighteen and this is being routinely bypassed by DTCGT. This does not necessarily mean the official system should be abandoned, but it does mean that current regulation urgently needs to be revisited.

Donors are being contacted by genetic relatives they did not know about or are matched with donor offspring who have not yet been told that they are donor conceived. This places people in a difficult position; donor conceived people may have knowledge that someone is donor conceived when that person does not know themselves, or donors might be contacted by donor offspring whilst not having told their own family that they were a donor. The emotional burden this can place on donor conceived people, donors and their families can be considerable and is largely unacknowledged.

Regulation needs to consider the implications of DTCGT and what support people need to manage these new connections.

Known donation deserves greater policy attention

The Curious Connections research, comprised of 88 interviews, maps the personal life impact of being a donor in the UK.

It showed that many donors experience a strong sense of affinity with their recipients. Egg donors, in particular, can feel connected with the mothers of donor-conceived children, even when they had never met.

For some donors, this led them to seek out ‘open’ or known donor arrangements, where they had an ongoing relationship with the recipient family. Interviews with both egg and sperm donors indicate that current models of identity-release donation do not work for everyone and rates of known donation are increasing. Hence, our research suggests that it is timely and important to consider regulatory changes that allow for more flexibility in terms of donor conception arrangements.

The wider family must be recognised

Our research consistently points to something that current policy largely overlooks: donation does not only affect donors and donor-conceived people. It affects the donors and donor conceived people’s own children, parents, and partners, and extended family, who may develop their own feelings of connection with those related to them through donor conception.

We recommend that legislation explicitly recognise this wider network of relationships. Practical measures could include opening the HFEA’s existing Donor Sibling Link, (which allows children conceived using the same donor, to apply to connect after they turn 18) to the raised children of donors and ensuring that counselling provision acknowledges the complexity of these extended family dynamics.

Counselling must be long-term and funded

Across our research, one finding recurs: the need for high-quality, long-term counselling provision. Implications counselling is currently a requirement of the donation process for donors and recipient parents, but our research suggests this provision is uneven and insufficiently sustained.

Donation is not a one-off event. A donor may find that the anticipated contact from a donor-conceived person, or the lack of it, raises new questions. Their own children may develop curiosity about donor siblings. Their parents or wider family may feel themselves to be impacted. Donor-conceived people also require support –  our research demonstrates how the need for support can ebb and flow across the life course, for all those involved.

In sum, evidence shows that counselling should be freely available to all those impacted by donor conception. It should be clearly separated from the legal process of informed consent, so donors and recipient parents feel genuinely free to explore what donation means to them. Equally importantly, counselling must remain available post-donation, not just at the point of donation.

Calls for reform

The UK’s approach to gamete donation needs reform. The evidence gathered by our research programmes points clearly to areas where the current system is not keeping pace with the realities experienced by those it affects.

Regulatory attention to the impact of direct-to-consumer genetic testing; the growth of known donation; recognition of the implications for peoples’ wider family; and better funded, long-term counselling are all priorities that our research shows need further attention.

Acknowledgements: we would like to thank Leah Gilman and Caroline Redhead, the ConnecteDNA team and our research participants.